Grade 5 Spondylolisthesis ~ 9 year old female

[megsworriedmom]

My daughter, 9 years old, has been suffering with back pain for approximately 3 years but was officially diagnosed 1.5 years ago with grade 5 spondylolisthesis. My husband (her dad) has grade 3 spondylolisthesis, so we are assuming she has inherited this condition from him. (not that it matters, just wanted to point out it was not from trauma)

She has been going to Sick Kids Hospital in our area of Toronto Ontario Canada.  At our first appointment, the doctor assessed her and recommended physical therapy.  He graded her at a 4 at that point and he wanted to monitor her every 6 months.  Now at this point I was under the impression my daughter's condition was identical to my husband's (we didn't know my husband was at a grade 3 ~ we learned this just 2 months ago).  He has led a relatively normal life, managing his pain ok.  So, my while my daughter regularly complained of pain, we thought that she would be ok.  With that said, I really didn't convey to the doctor how much pain she actually was in at that time, mainly because of my fear of my daughter possibly having surgery.  

She had a spinal x-ray (front and side views) done July 2009 (by her family doctor), Jan 2010 (Sick Kids), and July 2010 (Sick Kids).  Jan 2010 was her first appointment at Sick Kids and the doctor diagnosed her at a Grade 4.  At the July 2010 appointment, he said her slip has not worsened and to come back in 6 months.  I looked at the sheet that they gave me for our next appointment and under the DX it had Grade 4/5 (this is a change to me).  We were due to take her back Jan 2011, however 3 months ago my daughter's condition significantly worsened.  She could no longer run (she use to be able to run, she would struggle but she could do it), she was now struggling to even walk "normally".  Her pain had increased considerably to the point of crying every single day in pain saying that she felt like she was dying.  

In October, I called Sick Kids to inform them of my daughter's worsening condition and asked to see the doctor.  We went in the next day and they wanted to take yet another x-ray.  I refused this x-ray.  She had just had an x-ray done 3 months prior.  My daughter is 9 years old ~ her reproductive organs are developing.  I am concerned about her future fertility.  So, at this appointment he said that she is Grade 5 spondylolisthesis.  She has no reflexes in her legs at all.  He then said to get her scheduled for surgery but in the meantime let's try a brace with a left leg cuff.  She hyperextends her left leg.

So, she is scheduled for surgery however it is not until April 19th!!!  She is now having twitching in her right toes.  She is having tingling/burning sensation on the side of her left foot by her big toe down to the arch of her foot.  She has been wearing the back brace w/ left thigh cuff for approximately 4 weeks now.  She is still in pain but not crying in pain as often.

The doctor does not have the best bed-side manner.  He is good with my daughter but he doesn't seem to be trying to educate us what-so-ever.  My husband and I feel that the doctor doesn't take my daughter's pain & condition seriously.  He doesn't listen when we tell him she cries every single day.  He told us that she is "functioning" and that he has patients with this condition that can't even walk.  Does that mean my daughter's quality of life isn't important.  I mean, should we wait until she CAN'T walk?  I'm frustrated.

I guess these are my questions:

1.  the amount of x-rays she is receiving, is it concerning?  Are her reproductive organ's at risk here?  How much radiation is too much for a 9 year old developing girl?
2.  Am I wrong in thinking that my daughter's condition is NOT going to get better with physical therapy and back bracing?  I think it is ridiculous to be waiting for surgery, I think her condition is serious enough to warrant surgery asap.
3.  With the twitching/tingling/burning sensation she is complaining about in her feet, is this a sign that the nerve is being compressed/damaged more?

I am feeling desperate to help my daughter.  Her slip is just so severe, her pain is so severe at times that I am scared for her and her future.

Any help/advice you can offer me would be greatly appreciated.  I apologize for the length of my message.

[piper007]

My heart aches for your daughter as I too went through the same thing at her age, I am 33 now. My leg burned for a few years and I had terrible pain when standing and walking.  After going to the family doc and the podiatrist I was finally taken to ortho at age 14.  My slip was grade 3/4, I was referred to Shriner's Hospital in Mass. Right away I was fitted for a brace and wore that for 5 months with no mechanical benefit.  I eventually went through 3 different fusions over 3 years. I must stress to you the importance of doing everything the doctor says! When you're a kid and you feel better you just assume you can do anything physical and it is easy to stop wearing the brace thinking you are all better.  I was not "compliant" and therefore I had to have the fusion redone a couple of times and each time it was way more intense.  The last fusion was through the front with my fibula inserted like a dowel.  This certainly made me a compliant patient!

As for your question about her symptoms-yes these are most definitely the results of nerve compression.  My doctor did surgery after 5 months of bracing and each time the fusion failed he had me back in the OR quickly.  I am surprised they are waiting so long with such a high grade slip.  A huge concern for these high grade slips are the bowel and bladder functions as their nerves are being compressed and permanent impairment can be a result.

I wish your daughter and family the very best of luck through all of this.

[Dr Arora]

Hi, the treatment plan for spondylolisthesis varies according to grades.
Grades I and II: treated conservatively with bracing, physical therapy, and activity modification. Grades III and IV or higher: at risk for progression; surgical fusion is recommended;
most clinicians recommend fusion in situ without correction of the slip because corrective procedures have a higher incidence of neurologic sequelae. Epidural steroids can be helpful in treating radicular symptoms like twitching/tingling/burning sensation. Good luck